Written evidence from the National Infertility
Awareness Campaign (COM 62)
1. The National Infertility Awareness Campaign
(NIAC) is an umbrella body established in 1993 with support, which
it continues to enjoy, from a wide range of organisations involved
in the field of infertility, including infertility charities,
patient support groups, healthcare professionals and the pharmaceutical
industry. It campaigns for equal access for those with an established
clinical need to a full range of services for the investigation
and treatment of infertility on the NHS.
2. The Government's White Paper on Health,
and specifically its related consultation document, Liberating
the NHS: Commissioning for Patients, does contain a number of
proposals, which are likely to have a significant impact upon
the future commissioning of NHS services for infertility. We have
therefore focussed our response on those proposals.
SUMMARY
3. We believe that the changes proposed
in the White Paper in relation to commissioning could present
a real opportunity for the NHS finally to provide equal access
for those with an established clinical need to a full range of
services for the investigation and treatment of infertility. For
too long, access to services has varied considerably across the
country in terms of the number of cycles of assisted conception
treatment available and the access criteria being applied. This
has meant that many patients have struggled to receive the treatment
they need, and indeed, some have not been able to access treatment
at all.
4. We believe that the best way to achieve
equal access to fertility treatment would be to recognise infertility
services as a specialised service and to place them under the
responsibility of the new NHS Commissioning Board, working with
GP consortia and with the advice of an established national, or
regional, commissioning network/networks for fertility, comprising
fertility specialists, infertility patient representatives and
other health professionals.
5. We do not think that responsibility for
the commissioning of these services should be left to GP consortia.
We believe that there needs to be active regional commissioning
of fertility services, overseen by a national body, accountable
to the Secretary of State for Health, that provides standardised
guidance and monitors performance in line with a clear set of
outcomes and quality standards in order to encourage greater consistency
in service provision.
6. Key to this will be to ensure that the
NHS Commissioning Board drives forward a national commissioning
plan for infertility services, based on the recommendations of
the National Institute for Health and Clinical Excellence's (NICE)
clinical guideline on fertility and supporting Department of Health
guidance, and which promotes timely access to services. This should
be advised on by an established commissioning network/networks
for fertility accompanied by a clear process of wider consultation
with fertility clinicians and patients.
7. We would also call for the reinstatement
of the 18-week waiting time measure for fertility services. This
did much to help reduce waiting lists for patients seeking fertility
treatment, which previously varied enormously and could require
couples to wait for a number of years.
CURRENT SITUATION
8. Around one in six couples seek specialist
treatment for fertility problems, and infertility can have a profoundly
distressing and devastating impact, something which is often misunderstood.
However, excellent results can be achieved in treating infertility
if patients are rapidly investigated and referred for appropriate
treatment.
9. Infertility was referred to NICE in 2000
by the Secretary of State for Health, with a view to tackling
the inequality of NHS provision of infertility treatment that
had existed since in-vitro fertilisation (IVF) first became viable.
The aim was for couples to receive fairer, faster access to clinically,
cost-effective and appropriate treatments.
10. In 2004, NICE published a clinical guideline
on fertility, which included a recommendation, amongst others,
that up to three full cycles of IVF be made available on the NHS
to those meeting its clinical criteria. A full cycle of IVF is
defined as a fresh cycle plus the transfer of frozen embryos where
this is possible (Department of Health, Dear Colleague letter,
August 2008). The guideline is currently under review, due for
publication in 2011.
11. In 2006, Department of Health began
work with Infertility Network UK (I N UK), a founding member of
NIAC, on a project to liaise with Primary Care Trusts (PCTs) in
England to encourage implementation of the NICE guideline through
the sharing of best practice. The project involved I N UK carrying
out both a survey and a series of one-to-one meetings with PCTs
to identify barriers to, and good practice in, implementation.
12. In 2008 the Department of Health set
up an Expert Group on Commissioning NHS Infertility Provision
in order to support the I N UK project, help NHS commissioners
in their decision making on the provision of infertility treatment
and encourage progress towards implementation of the NICE fertility
guideline. The Group published a commissioning aid in June 2009.
I N UK was also asked by the Department of Health to develop a
set of standardised access criteria for patients seeking treatment,
also published last June.
13. Whilst some good progress has been made
towards meeting NICE's recommendations, there is still a lack
of full implementation across England and significant variations
continue to exist in the number of assisted conception cycles
funded, the definition of a "full" cycle of IVF and
access criteria for treatment.
14. In its 2009 report on the project, I
N UK highlighted a number of potential barriers to implementation.
They included a lack of clarity around responsibility and accountability
for the commissioning of infertility services, as well as understanding
of the recommendations in the NICE guideline, including the importance
of providing a full cycle of IVF.
15. This last point is particularly relevant
given plans to move in the near future to a policy of transferring
only one embryo at a time during a cycle of IVF for those who
are most at risk of conceiving a multiple pregnancy. The Human
Fertilisation and Embryology Authority (HFEA) has called for a
reduction in the number of multiple births resulting from IVF
by recommending a policy of Single Embryo Transfer for appropriate
patients: a move, which is more likely to be accepted by patients
if they have access to a full cycle of IVF.
16. Moreover, we have recently become aware
of a handful of PCTs that have decided to reduce or, in some cases,
suspend funding for IVF as a cost-cutting measure. This is completely
unacceptable and, in our view, contrary to the principle in the
NHS Constitution of using resources for the benefit of the whole
community, to make sure nobody is excluded.
CLINICAL ENGAGEMENT
IN COMMISSIONING
17. For the reasons given above, we do not
think that responsibility for the commissioning of infertility
services should be left to GP consortia. The concern with this
approach is that it could lead to even greater variability in
the availability of services, which would be disastrous for patients.
18. Patients' access to services could be
further affected as GP consortia take time to establish collaborative
commissioning arrangements for infertility services, particularly
as they are unlikely to have expertise in this area of healthcare.
We therefore believe that there needs to be active regional commissioning
of fertility services driven at the national level by the NHS
Commissioning Board through a national commissioning plan.
19. Clinical expertise should be accessed
through national clinical evidence, such as the NICE fertility
guideline, and via the etablishment of a national or regional
commissioning network/networks for fertility. This network/networks
should comprise relevant specialists in the field and infertility
patient representatives to advise the NHS Commissioning Board
on the development and implementation of its commissioning plan,
based on a clear patient pathway.
20. To support this, there should be a clear,
standardised process for engagement with clinicians and infertility
patient representatives that is applied across the country. The
NHS Commissioning Board should work with GP consortia to ensure
that there is engagement throughout the commissioning process.
ACCOUNTABILITY FOR
COMMISSIONING DECISIONS
21. It is important to involve infertility
patients and their representatives in making commissioning decisions.
With regard to infertility, this means ensuring that patients
are included early on in the commissioning process and not just
at the point where a final decision on the structure of services
is to be made. This will help to ensure that services reflect
patient's views and needs and that their experience of them is
positive.
22. We believe that there should be a clear,
standardised process for engagement with patients that is applied
across the country so that they are clear about when and how they
can make their views known. Currently, it appears to be up to
PCTs to decide the level of engagement that they deem is appropriate
to the scale of changes in the commissioning/funding of services
proposed. However, the interpretation of this seems to vary from
one PCT to another so that patients are uncertain as to whether
they are entitled to have a say.
23. The NHS Commissioning Board should work
with GP consortia to ensure that there is a formal process at
the regional level for patient engagement throughout the commissioning
process and that, additionally, patients should be represented
on the fertility commissioning network/networks, which will advise
the Board on the commissioning plan it develops for fertility
services.
24. Finally, the Board should work with
GP consortia to develop a robust monitoring process for the delivery
and performance of fertility services that includes an assessment
of patient experience and the need to capture patient views on
services. It will be important to ensure that this achieved through
liaison with existing systems of engagement such as Local HealthWatch.
RESOURCE ALLOCATION
25. This is an area on which NIAC would
welcome further information from the Government. At present, PCTs
decide on the level of funding to allocate to fertility services,
which varies considerably.
26. In order to encourage greater equality
of service provision across the country, we would like to see
the development by the Commissioning Board of a clear, costed
patient pathway for fertility based on a national tariff for services
so as to aid better planning in the allocation of the funding
needed to provide the full range of services recommended in the
NICE guideline. Work is already underway to develop a national
tariff for fertility and we hope that this continues to progress.
SPECIALISED SERVICES
27. We were extremely concerned by the removal
of tertiary infertility services from the national specialised
services definitions set, despite the recommendation that these
services continue to be commissioned regionally by PCTs. We are
anxious that this move presents the danger of individual PCTs
deciding to opt out of collective commissioning, leading to even
greater variability in the availability of services.
28. We are further concerned that this could
be compounded by the proposal in the consultation that it will
be up to GP consortia to decide at what level to commission low-volume
services not covered by national and regional specialised services.
For this reason, NIAC would call for fertility services to be
placed under the responsibility of the NHS Commissioning Board.
29. We believe that, in implementing these
recommendations, the Government would be aligning fertility services
with both the objectives and spirit of the White Paper, which
aims to deliver a health service of equity and excellence. Thank
you for the opportunity to respond to this inquiry.
October 2010
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